Vasanthi, a single mother from Enmakaje village of Kasaragod district was concerned not just about her livelihood when the COVID-19 struck, but also about her son’s well being. The school that 22-year-old Manjunatha — who has intellectual disabilities — attends, was closed indefinitely. Vasanthi and her son Manjunatha live in a two-room, leaking hut, and she works as a house help for a living. Manjunatha was a student at Enmakaje BUDS school. The school helped him be functional on his own, while Vasanthi went to work as a domestic worker. But ever since the pandemic hit, the BUDS schools across Kerala have been shut, leaving their students and their families struggling. This is not just the story of Vasanthi and Manjunatha, 4862 students and families are facing distress.
BUDS schools are centres for people with intellectual and psycho-social disabilities, run by Kudumbashree and local self government bodies in Kerala. The first BUDS school was established in 2004 in Venganoor Panchayat of Thiruvananthapuram. Later, in 2008, Kudumbasree established the school in 10 more panchayats. Now there are 293 BUDS schools across the state, where 2,568 children below 18 years and 2,294 students above 18 years have enrolled. Initially the schools were only meant for students below 18 years but later, there was a huge demand for the rehabilitation of people above 18 too. The schools mainly help people who are in poverty, as well as face challenges due to disability.
What makes BUDS different is that they emphasise on a support and rehabilitation mechanism by incorporating the family and community. In many places, students' mothers would take turns to spend time with children. Apart from teachers, parents are also present in these schools to strengthen the support system. Community participation is another system that these schools provide. While the pandemic has been difficult for all students, for the students of BUDS schools and their families, it has been double so.
Manjunatha and his elder brother were victims of Endosulfan tragedy. As a result of wide usage of Endosulfan pesticide in Kasaragod district, many people, including babies, have had serious health disorders. Manjunatha’s brother died a few months back due to COVID-19. Ever since, Vasanthi has started taking her son to the houses where she works as a domestic worker. She takes him wherever she goes, as she can't leave him alone at home. From using the toilet to having food, Manjunatha requires Vasanthi's help. Though teachers at the BUDS school had taught him to do things on his own, he unlearned everything as school was closed.
Thankamani from Mazhuvannoor of Ernakulam district however, has stopped going to work altogether as the 56-year-old can’t leave her 25-year-old son Ayyappadas alone at home. Ayyappadas has intellectual and physical disabilities, and was a student at the Mazhuvannoor BUDS school. "We survive just from the free ration kits we get from the government. From the school, we get a kit for Ayyappadas. As he cannot walk, I will not be able to take him to my workplace. I need to be with him always for all needs. Earlier BUDS school was a solace, and I was able to go to work as a domestic worker," Thankamani tells TNM. "For the last one year, we’ve had to borrow money for medical or any other emergency expenses. However, at least we get food," she says.
These students are not just stuck in poverty after the pandemic, but their support system and various other developments have come to a standstill.
The Kerala government had launched the Thenkoodu learning application for special school students to engage them in learning when schools are closed. But a BUDS school teacher says, "When regular school students are learning through online classes, many of them don't even listen to classes. Then how can we be expected to engage students with functional needs and have psycho-social disabilities? They undergo a lot of psychological issues and we cannot make them sit in front of a phone, or make them do a task through online instruction."
Many BUDS school teachers and parents across the state say that more attention is required for these children and adults, as in many such schools, there are many above 18 years of age, as they not only have disabilities, but also come from poor economic and social backgrounds. "There is a difference between other special schools and BUDS schools. The majority of the students in the latter are from a poor economic background. The students of private special schools will have smartphones or some other mechanisms to get them some support while at home. But for the students of BUDS schools, all doors to the outer world are closed if their schools are not opened. Their parents will not be able to manage as they are running around to make a living. This situation can worsen their conditions as they are locked inside. But we are helpless here, we cannot afford to have a system to give special individual attention to them at this stage," says an officer at the social justice department seeking anonymity.
The problems pointed out by the officer are reflected in every BUDS school teacher and parent’s words — that there is this section of people of different age groups, who can't even understand what is happening around, and are under a lot of trauma.
Since BUDS schools focus on inclusive and integrated education, as a rehabilitation center, concerns over unlearning are high among teachers. A majority of the students at these schools haven't had an early intervention, and they got support only after joining these schools. "The online classes for the students were not useful for many. Among the 30 students in my class, only 11 of them had smartphones at home. There are students from 5 years old to 30 years old in the class," says Bharathi M, BUDS school teacher in Karadka of Kasaragod district.
Many of the students in Karadka are also endosulfan tragedy victims. "Some parents have called me to say that the children get very violent. After coming to school, many of them had stopped showing behavioural disorders. But now, for some of them, it is recurring. One of our students was not toilet trained when she first joined our school a few years ago at the age of 17. Within a year, we trained her to take care of her basic needs herself. But yesterday, her mother called me and said that she refuses to go to the toilet, and has gone back to the same condition before she joined the school. Now when the school reopens we will have to start from scratch. The kids have already unlearned many things," Bharathi adds.
Bharathi says that this unlearning happens for these students even during the Onam and Christmas vacations, but teachers can easily solve this as these are short holidays. "There is another student who calls me over the phone a lot and cries. Some days when I am busy, I have seen more than 200 missed calls from her. I understand that many of them are going through a lot of stress," she adds.
Jini VN, teacher at Mazhuvannoor BUDS school also expresses concerns over the pause in students’ support system. Her school had 39 students in the age group of four to 49 years. "The other day, a parent had called me saying one of my students had stopped talking to others and she felt so depressed. She was quite active in the class. Later, we went to their house, spoke to her and consoled her. Another boy who used to be very active in the school and who used to come to me running when he sees me, now refuses to step out of the house. When I went to his house, he just remained inside and smiled at me. All this is just painful," Jini says.
K Mariambi, a teacher at Enmakaje BUDS school says students diagnosed with autism are the most affected. "It takes us a lot of effort to bring some changes to their social and communication skills. They had learnt to communicate with their classmates and had been in the process of socialising. This long gap has created a major impact. If the school reopens, we will have to start again and we are not sure how tough it will be," she says.
Most of the teachers at these schools are appointed on COVID-19 duty by the social justice department. They say that they were able to give only minimum attention to these students who are in need. "If we pay a house visit and interact with them, we can bring some changes. These students are also missing their social life and they cannot understand what is happening. They are the ones who need support the most. But we don't get time at all; after COVID-19 duty in the evening, we see a lot of missed calls from them. We are not even able to attend these calls," says a BUDS school teacher.
Even parents are helpless, and they are struggling with the present situation. "My 10-year-old gets violent and I do not know what to do. He was diagnosed with autism, and four years ago he started going to the BUDS school. My husband does daily wage work and we cannot afford to have any other professional help," says Fathima, a mother from Kasaragod district. Fathima's son Azhar hadn't received any intervention until he was 6 years old.
"We know that COVID-19 duty is unavoidable. But if we are excluded for a few days a week from duty, we could focus on students. We are confident that we can give them individual attention," Bharathi said.
Parents also seek an alternative system so that students will be engaged. "I cannot specify what can be done. But if the government brings some alternative system, my son wouldn't be so depressed and also I can go for work. But I am aware that children with disabilities should be extra careful at this time. But how long I can lock him inside," Thankamani said.